Beyond Fatigue


MYALGIC ENCEPHALOMYELITIS (ME)

CHRONIC FATIGUE IMMUNE DEFICIENCY SYNDROME (CFIDS)

CHRONIC FATIGUE SYNDROME (CFS)

ME/CFIDS/CFS is an inflammation of the brain, perhaps caused by a virus.  It is an autoimmune disorder in which physical, mental or emotional stress cause neuroimmune exhaustion.  The fatigue is not the result of physical exertion and is not relieved by sleep.

“Postexertional neuroimmune exhaustion” means you have experienced unexplained and disabling fatigue after simple activities.  There is a delay of hours to days between the effort and the exhaustion; specific exhaustion can last hours to weeks.  The disorder can last from months to many years.

Random physical activity and physical or emotional stress make it worse.  Repeated activity leads to failure in strength or stamina.  Impairment can vary from fairly modest to so severe that patients may be bed-bound and need total nursing care.

The exact cause is unknown; there is no known cure.  There is no consistent treatment:  Some patients benefit from some treatments some of the time. Alternative or complementary treatments are more promising than typical medications.

There are really no other conditions that look exactly like CFIDS in all its aspects.  The impact is dramatic and devastating.

Problems with energy production or energy transportation within the body:

Severe, disabling fatigue*                   Insomnia                Sleep disturbance*

Physical

Headache            Sore throat            Nausea                 Tender lymph glands*

Dizziness*               Fever*          Muscle pain          Stabbing pain in arms and legs

Joint pain without swelling or redness                    Palpitations*                    Food sensitivities*

Frequent urination*                   Lightheadedness            Difficulty breathing*

Difficulty regulating body temperature*                Problems focusing vision*

Sensitivity to light or noise*                  Problems with depth perception

Poor coordination

Emotional

Mood disturbance          *                   Depression/Anger*

Mental

Confusion*           Impaired concentration*           Impaired short-term memory*

Impaired intellectual performance*            Inability to process information*

Some medications make it worse:  benzodiazepines,* beta-blockers, sedatives, antidepressants,* antibiotics.*

It’s quite possible to have CFS/ME and not have all of these symptoms—an individual’s experience of CFS/ME is essentially unique. An unhelpful line of thinking among ‘dinosaur doctors’ is to say to a fatigued patient, on receipt of a normal set of blood reports, that there is ‘nothing wrong’.

“Patients get up for a few hours and look pretty decent and then go back to bed for a couple of weeks.”

“It’s beyond tiredness.  It’s in every cell of my body.  Even sitting in a wheelchair is taxing for me”

*Symptoms I experience.

Compiled from multiple professional documents and the experiences of several patients.

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About annecwoodlen

I am a tenth generation American, descended from a family that has been working a farm that was deeded to us by William Penn. The country has changed around us but we have held true. I stand in my grandmother’s kitchen, look down the valley to her brother’s farm and see my great-great-great-great-great-grandmother Hannah standing on the porch. She is holding the baby, surrounded by four other children, and saying goodbye to her husband and oldest son who are going off to fight in the Revolutionary War. The war is twenty miles away and her husband will die fighting. We are not the Daughters of the American Revolution; we were its mothers. My father, Milton C. Woodlen, got his doctorate from Temple University in the 1940’s when—in his words—“a doctorate still meant something.” He became an education professor at West Chester State Teachers College, where my mother, Elizabeth Hope Copeland, had graduated. My mother raised four girls and one boy, of which I am the middle child. My parents are deceased and my siblings are estranged. My fiancé, Robert H. Dobrow, was a fighter pilot in the Marine Corps. In 1974, his plane crashed, his parachute did not open, and we buried him in a cemetery on Long Island. I could say a great deal about him, or nothing; there is no middle ground. I have loved other men; Bob was my soul mate. The single greatest determinate of who I am and what my life has been is that I inherited my father’s gene for bipolar disorder, type II. Associated with all bipolar disorders is executive dysfunction, a learning disability that interferes with the ability to sort and organize. Despite an I.Q. of 139, I failed twelve subjects and got expelled from high school and prep school. I attended Syracuse University and Onondaga Community College and got an associate’s degree after twenty-five years. I am nothing if not tenacious. Gifted with intelligence, constrained by disability, and compromised by depression, my employment was limited to entry level jobs. Being female in the 1960’s meant that I did office work—billing at the university library, calling out telegrams at Western Union, and filing papers at a law firm. During one decade, I worked at about a hundred different places as a temporary secretary. I worked for hospitals, banks, manufacturers and others, including the county government. I quit the District Attorney’s Office to manage a gas station; it was more honest work. After Bob’s death, I started taking antidepressants. Following doctor’s orders, I took them every day for twenty-six years. During that time, I attempted%2
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